Thursday, December 31, 2009

I decided I needed to do this. For me. Lord knows I have a lot to say and no one to say it too. One can only talk to themselves so much before yourSelf even looks at you and says..dude, really, even *I* need a break. Also I've been thinking up different things I would say in my "blog"...to the world, to myself. SO - here I am. Maybe it's the New Year thing or maybe I just decided it was time. Most likely both.

A bit about me.

I'm 37. I'm relatively healthy. I don't take any sort of meds at all - maybe the occasional Tylenol or Advil for a headache but it has to be a pretty bad headache...and I don't get headaches very often so there you go. I have 3 beautiful children who are the joy of my life and occasionally the reason I have to have a drink. I have 2 boys and a girl.

After my daughter was born this past June, one week after actually, I woke up to find the right side of my face didn't seem to work right - specifically my mouth and cheek, and then later my eye and forehead. I woke up with Bell's Palsy. No one knows why. It just happens to some of us real lucky people. Anyway, I saw my OB and he put me on Steriods and told me it would be gone in about 3 weeks. I have had this condition now for just over 6 months. I have regained some of the muscle movement in my right cheek and I can smile again (and omg how WONDERFUL it is to be able to smile - you'll never know - NEVER take it for granted). However, it's like some of the nerves never fully re-connected. I can't move my bottom lip on the right side or the top lip on the right side. The right nostril still doesn't move. My right eye still will not close fully at the corner. I can not raise my right eyebrow and part of the right side of my forehead still won't move. Also the cheek muscles that have come back have now become hypertonic and pull continuously upwards. It is worse when I attempt to close the right eye - it becomes a sneer.

It is truly like a living nightmare.

I look normal in my dreams - when I sleep. Lots of nights I dream that I'm with my husband at dinner or a bar or a club and I always look like I used too. And I'm happy. And free. And normal looking. And then I wake up and walk by a mirror and remember.

I had someone on another board post to me, about this condition, that it was "just a little facial paralysis - not that big of a deal". Well, it's not a big deal when you have a normal looking face and you don't have to tape your eye closed and your mouth doesn't pull into a sneer and you can eat and drink without it FALLING OUT THE SIDE OF YOUR MOUTH. Just a "little facial paralysis" my ass.

This is what Col. (Dr.) Alan Holck and Maj. (Dr.) Manuel Lopez have to say about Bell's Palsy..."Loss of the facial nerve can be devastating and life-changing. The nerve provides motor movement to the face (overall facial animation). It allows you to smile, chew, close your eyes and raise your eyebrows," Dr. Lopez said.

"From the top of the face down, the problem usually starts at the brow which causes problems closing the eye," Dr. Holck said. "Subsequent drying of the eye can result in infections and loss of vision. The midface droops. The corner of the mouth also descends and, therefore, drinking becomes a problem. Patients will drool and have difficulty eating. Food tends to get lodged in their mouths. You become almost a social leper because you don't want to go out and keep having to get up to go wipe your mouth. And among other issues, the tip of the nose deviates and so it is really a problem. It is most importantly a functional issue but also has a devastating cosmetic component."

A social leper. It is a very good description, and unfortunately, dead on accurate.

Most of my friends IRL have split. I think it's hard for them to look at me. But, more than that, I represent what can happen. The minority, the slim chance, the statistical whamo. And no one wants to have to see that because then it's reality and you may have to consider it could happen to you. Also, I don't think anyone knows what to say about it or not to say about it. Do we talk about it or do we ignore it? What would be better? It stresses people out so they just avoid the situation - like we humans are prone to do. Ignore it and it will go away. Except that also means ignoring me, the person, too.

And it's funny to me how much I notice people's faces now. I notice symmetry. I notice asymmetry. As if I'm trying to find a comrade - someone who knows this. I'm trying to find others so I don't feel so alone. I also detest fashion magazines now. I used to LOVE makeup. LURVE it. I could DO some makeup and I loved playing with it. I don't even bother most days. I mean why play up your features when that will only bring attention to how wonky they are now??? It sucks ass.

BUT. I'm trying to not loose hope. Some days I'm admittedly in the floor. Other days, like today, I'm trying to remain hopeful. Loss of hope is debilitating. I'm trying to hang on to some. I'm going to go see an Acupuncturist next week. And I thought maybe I'd look into hypnotism. I mean if my brain BELIEVES the nerves will continue to heal - they'll heal - right?

I want my face back. I want MY face back. I want to be pretty for my husband again. I want to be able to kiss him again and have my lips work. I want to eat again without loosing food out of the side of my mouth. I want to take a drink of something again and have it not end up on my shirt. I don't want to feel humiliation every time I try and eat or drink in front of someone. I want to be able to close both of my eyes. I want to be able to close both my eyes when I kiss my husband.

Yes, this is a downer sort of post. It's my blog - I'm allowed. I'll get to the Meningiomas later. (the BP sent me to a Neurologist who sent me for an MRI, and then another, turns out I have 3 Meningiomas, benign brain tumors with one being on my right optic nerve which they tell me will cause me to eventually go blind in that eye, as well as the BP and none of them are related to the other. I know, I'm a freaking barrel of monkeys over here. Or a lightening rod for odd conditions. Again - most likely both.)

I'll get to my positives and the things I've pulled from this experience. But today I needed to get this out. And move on from here. I'm not saying I'll never have a downer post or an angry post because I'm sure I will...but there will be some more positive ones to follow. There are days you just need to hate the world. And I do. But I am finding that more days than not, now, I am finding joy and light and attempting to leave the darkness behind me. It's hard. Every time I see an old picture of me I feel a tightness in my chest and a sadness. I have not accepted my face yet. I don't know if I ever will. But each day is another chance to attempt it and try and move forward. It's all I can do.

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About Me

mom to 3, ex-HR exec, writer, avid reader, dealing with Bell's Palsy and 3 Meningiomas. I love UPcycle decorating my home, as well as having sad, dark aspirations to be a less OCD version of Martha Stewart...I know - there is medication for that - I just refuse to take it.